Smack Down Saturday
We get out of the car and you hear it: whack….or…twinnnannng…you pick up the sound of either a wooden bat hitting the ball or that of a metal bat (still allowed here in Georgia in youth baseball). You get some dust in your eyes from the wind blowing the infield dirt around in the air. You’ll be thirsty in 5 minutes. Youth baseball.
We walked up from the parking lot and I could feel Demetrius energy pick up as I held his hand, he wanted to run. He ran right over to the playground built for the little brothers and sisters of the kids playing ball on these fields. Also a place for him to explore and play, even though the fields around him are filled with boys his age.
Maya and Kennedy spin themselves silly
I am well grounded in our autistic world: I know and recognize what the reality is for him in the classroom. I see the body of work, and I realize where he is, and isn’t, and what he can produce. I also watch him ‘parallel play’ with his sister and friends. Even the kids that understand the boy sometimes stare when he is over stimulated…when he squeals loudly, or does his TV talk, and he catches them by surprise…I’m used to this. It’s become easier over these past 7 years. I’m unfazed as he plays at a playground suited for his 5 year old little sister. But I’m not granite.
We went to watch our friend Joseph play baseball on a perfect Saturday afternoon. On one field were the kindergartners playing tee ball with the overly enthusiastic parents cheering little Robbie to run to base after he hit the ball 3 feet….albeit, he ran to third base after he hit the ball, but still….that roar of these parents…the clapping…Joseph’s in the 7 year old league where they have the ‘moved in’ fences, but the kids are organized and playing better…and as it is, some are really getting it (physically and mentally), but for the most part they are following the coaches direction and are attempting to relay the ball from the outfield to second to home. Joseph got a single and ran it out…beat the throw… he’s getting it.
Now don’t get me wrong, it was 7 year old boys…a few had more energy for the after game snack than the game itself, and one was trading what looked like Pokemon cards with a friend minutes after the game (you knew where their minds were during the game, not on the game).
But it was unbelievably hard for me…I steeled myself a bit (we all do it when we go to these things, or we try to, don’t we?), but I just simply wasn’t prepared. Boys were running around playing organized sports, throwing with their dads from a pitching mound…the entire male bonding crap. The crap that defined my childhood and relationship with my father.
However, Demetrius runs by the boys playing dodge ball against the wall, flapping his arms, squealing…completely happy…but completely out of it. He physically looks the same: same height, same build, same fresh look of life on the face…same teeth emerging in the front of their mouthes…but he’s not like them at all, is he? He’s right next to them, and miles away. They stop their impromptu game as he runs in front of them talking about, I don’t know what…he scurries on…I scurry after him…because he’s wandering off away from the fields… He nearly got hit by a boy pitching to his dad (a little practice) in the fenced off area for that…it needed to be explored and Demetrius was focused on getting in there, not a bit on what was going on in the pitching cage. He tries to run on a field where a game is going on (in his league they often wander on and off the field during the game, so why couldn’t he here?). I chase.
When I did get to sit and watch a bit of Joseph’s game…I overheard one dad talking with his older son about the NFL draft and Brady Quinn dropping and who the Falcons picked. I watched. I watched Mr. Joseph coach from third base…I watched the boys and their dads and coaches. I watched the game and went from melancholy to depressed. I try to always be melancholy when it comes to these things…I find I handle them better, but sometimes it is always a bit more than I can handle. These moments are fewer now…but they move us a bit down past being ‘just gray’ into that very dark place in us.
Long and short of it is that I simply had no idea that this ‘experience’ would hit me like it did. Was it Demetrius running past boys in real baseball uniforms? Was it boys bonding with other boys as they have on baseball fields for generations? Was it that I had Demetrius’ Miracle League Game fresh in my mind from just a few hours before? Was it a combination? Yes to all of it and to some deeply tied fabric of what was my childhood…. kind of weirdly unraveling in this moment. Reality. We aren’t here, and we just won’t be. We just can’t always have our thickest skin on, even when we try. I watched, and I just sank.
I chased after him again when the game ended. We collected him and the Carraghers and went back to the cars to leave. Funny how it works – because who grabs my hand but Demetrius. Not me grabbing his…he takes my hand and rolls his fingers in my bigger hand to get a quick stim.
Demetrius: Joseph’s baseball game is over?
Daddy: Yes, we are going home now.
Demetrius: Joseph is having a sleepover?
Daddy: Yes, he is coming over.
Demetrius: Can he come with us?
Daddy: Well, Maya and Kennedy are riding with us; do you want to ride with Joseph?
Well, maybe we aren’t there with baseball or youth sports and maybe we don’t have the things that complete Daddy’s internal vision of a father/son relationship…silly things that we carry with us in our life that we assume we’ll pass on to our kids…but riding with our longest friend Joseph is a heck a lot of cooler than riding with Mom and Dad and our sister and her friend. So many of these typical boy things are emerging.
I love how long it takes a Rhododendron to emerge, and when it does, its beautiful. I try to remember this with Demetrius. It just takes awhile….
The Carraghers came over. We had a nice dinner and chatted. But like Demetrius at the baseball game running past the boys…I wasn’t there. Even with a sleepover the kids all crashed and the house got quiet. I sat downstairs on the couch and just stared at the TV. Somehow Kim just knew. The great spouses do.
I thought about how tired I am of worrying about his IEP. How worried I am about the toll that this takes on Kim each and every time we have one. Will I find the strength to begin to tell Maya about Demetrius being different – and how will we do it? I’m tired of squeezing his hand with fear that I’m going to lose him…all the time… because he’s a wanderer and he runs off no matter where we are and what we are doing…and I how I resent rarely getting to fully enjoy places, people and things because I don’t do anything but keep my eye on him and chase him down wherever we go. Only going to the movies gives me a reprieve.
The fear and nervousness that are always there…we just had ice cream the other night with friends and I never sat down, didn’t even try…because Demetrius kept running off into the field behind the ice cream stand and there is a drop off. Or towards the parking lot. Why sit? Why get to into the conversation with the adults? If I do, I’m just going to have to take off and get him. I am just tired chasing…
I know I’ll suck it up, tighten the belt, and go back to it tomorrow. But Saturday it just crescendo.
I got ready for bed, went down, and slept on the couch. I just needed my space, and I need to be with ‘this’…I didn’t want to talk about it. I just needed to work it through my head. If I brought it up, we’d be up to 1am talking…I didn’t want that. I know at times Kim needs to talk, and at times needs to talk to friends instead of me. I needed to roll this all around and then write it. Talking is for some other time.
Demetrius and Joseph have been sitting in this chair together watching SpongeBob for the better part of four years…I hope they outgrow the chair doing it at times. He’s our longest tenured friend. He gets Super D.
6:30 am comes and Joseph and Demetrius are standing over me.
Demetrius: We want donuts.
Normalcy comes in fits and starts in autistic house. While these children are prisoners of their condition and parents spend the rest of their lives swimming against the current, you have to appreciate the moments when you get them. A crack of dawn request for donuts. The want to ride in the car with one of the few buddies you have. You have to see and appreciate these.
A lilac blooms for about a week to two weeks each year. If you don’t notice, you’ll miss its beautiful flower and wonderful scent. It pays to watch, and notice what blooms, and when, your garden
You also have to curl up on the couch and say to yourself, “I don’t know how I’m doing this.” You need to be frustrated, angry, sad, and depressed. But you have to know you are going to get up the next morning and start over and you will do it. You have to.
And like my Saturday afternoon reality sucks moment… you have to leave behind a part of you and go find a new one to replace it. You have to stare that pain right in the face, take it, feel it, become numb to it, and find something to replace the hole in your heart that this other part of you was kept in. Plug it up with something that at least doesn’t hurt. Hopefully with something that makes you happy.
You have to simply know the stakes of the game of being an autistic child’s parent. The game is you’ll take the pain of what you don’t have and trade it for a little happiness for what you do have. It’s not a fair trade. But it is what it is. A lot of littles. Not a lot of bigs. A lot of running in this game. A lot of chasing.
The donuts arrive at about 7am; Daddy has a cup of decaf and a bit of a sore back. The noise level goes up with the ingestion of sugar and the decibel level of talking among little girls and Joseph is a bit loud for 7:05 am. Demetrius is at the table with them, but turns away a bit because of the noise…
I notice it. I’ll take it. I’ll embrace it. Time to suck it and play the game again: “Demetrius…talk to your friends.”
Someday Demetrius, someday… the flowers may all bloom at once, and won’t that be a sight for the world to see…